EU Public Consultations: the opportunity to influence EU legislation – each response matters!

The European Commission has recently launched three Public Consultation with a strong emphasis on citizen involvement. The three different questionnaires are open until the end of July 2021 with the aim to collect individual and organisations' views.

Public Consultation on Orphan and Paediatric Regulations

Link to the consultation: https://ec.europa.eu/info/law/better-regulation/have-your-say/initiatives/12767-Medicines-for-children-&-rare-diseases-updated-rules_en

Deadline to submit response: 30 July 2021. 

Public Consultation on Cross Border Healthcare Directive

Link to the consultation: https://ec.europa.eu/info/law/better-regulation/have-your-say/initiatives/12844-Evaluation-of-patient-rights-in-cross-border-healthcare/public-consultation_en

Deadline to submit response: 27 July 2021

Public Consultation on European Health Data Space

Link to the consultation: https://ec.europa.eu/info/law/better-regulation/have-your-say/initiatives/12663-A-European-Health-Data-Space/public-consultation_en

Deadline to submit response: 26 July 2021

The consultations are decisive chance for the paediatric cancer community to advocate that our issues are appropriately addressed. The number of responses emphasising paediatric cancer will count, therefore your individual and institutional contributions will be instrumental in this effort. For further information please contact the SIOPE office.


Childhood Cancers under the Spotlight in Europe’s Beating Cancer Plan

The European childhood cancer community is delighted that childhood cancer is now under the spotlight in the EU Cancer Plan. Our community including paediatric haemato-oncologists, parents, patients and survivors is now looking forward to shaping the implementation of these proposals building on existing projects and structures in the community. 

Our community was honoured to give input during the consultation process to help shape this plan, contributing over 200 individual stakeholder responses to the public consultation.  We are therefore very pleased that the Commission has heard the messages and has dedicated an entire section to childhood cancer in the breakthrough ‘Helping Children with Cancer Initiative’ which aims to ensure that children have access to rapid and optimal detection, diagnosis, treatment, and care.

We are enthusiastically looking forward to helping shape the implementation of the Plan’s proposals.

Europe’s Beating Cancer Plan can be found here.


EU4Health shall fund Europe’s Beating Cancer Plan and Helping Children with Cancer Initiative

The EU4Health programme is intended to boost the EU's preparedness for major cross-border health threats and improve health systems' resilience. It will also aim to fund ‘Europe’s Beating Cancer Plan’, specifically the ‘Helping Children with Cancer’ initiative – which will be instrumental for paediatric cancers.

It was announced that the EU4Health shall be a stand-alone dedicated funding programme with a provisional agreement on the budget of €5.1 billion. The Regulation (EU) 2021/522 entered into force on 27 March 2021 and applies retroactively from 1 January 2021.

Calls for funding will be opened in the middle of summer/early autumn of 2021!


Special Joint Policy Event of SIOPE – ECL – EPHA on Improving the Orphan and Paediatric Regulations

SIOP Europe and CCI Europe were pleased to run the Paediatric Regulation panel on childhood cancer needs at a collaborative policy event co-organised by SIOP Europe, ECL, EPHA and EFPN on the revision of the EU Regulations on medicines for children and rare diseases which was held on 20 May 2021.

This timely event focused on concrete recommendations to improve the Paediatric and Orphan Regulations and foster multi-stakeholder dialogue on actions that should be prioritised in Europe to speed up access to high-quality, safe and affordable medicines for patients.

The joint recommendations can be found here.

The recording of our discussion can be found here.